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Identity-first or person-first language?

2017

Hi All,

An issue has been brewing around in my mind for months now
and it is about time I get it out there to my CYC community in order to
gather further thoughts and thinking on the matter.

In the autism community, there is a self-advocacy movement
that believes in the promotion of neurodiversity and the strengths
people diagnosed with autism can bring to the world. I am a big fan of
this movement.

Many of these advocates believe that the helping professions
should discontinue using person-first language (ie. person with autism)
and instead adopt the identity-first language (autistic person). Our
field of CYC often explicitly teaches us to only use person-first
language when helping and referring to this population.

I personally agree with the identity-first version. I believe
it captures the proud identity of these self-advocates and reduces the
shame and labeling of autism as a disorder that is separate from the
person (implying there can eventually be a cure).

I, personally, do not like using anything other than “person” first
because it defines someone by something other than their humanity. If
you say “autistic” first it becomes the first thing I learn about the
person, which may not be the most important thing. Blind person
diminishes what else is interesting about a person who is blind. They
may be Ray Charles – who is a musician, an African American, a husband,
father, friend – who is also blind. In a “strength based” approach we
want to acknowledge that no person has just one attribute, but many
attributes. The most important feature of anyone to remember is that
they are a person, first. Other qualities to follow.

Lorraine...

Hi Lorraine,

Thank you for your reply. I used to think the same, as I am sure many
CYC practitioners do. This is why I brought it up. Your points make
perfect sense – in strength-based practice, we need to look at the whole
individual with all that makes them unique and wonderful. Interestingly,
I believe this is the exact point of the identity-first argument as
well.

I was first introduced to this identity-first concept a few years
back in my Disabilities Studies elective during my CYC undergrad at
Ryerson. I believe the first time it was used by disability advocates
was in the Deaf community as this population reclaimed the diagnosis
'deaf' and gave it a capital 'D' to signify that they consider Deafness
to be the most integral part of who they are; it is their cultural
identity with its own language and values. Referring to themselves first
as 'Deaf' signified their pride much like other diversity movements,
such as the LGBTQ community, who have proudly reclaimed their labels.

When I started learning of this and learned that a self-advocacy
movement was working toward the same idea in the autism community, I
decided to bring it up in my class of grade 9-12 students diagnosed on
the autism spectrum. One young lady proudly admitted she was already
quite aware of this language and said something along the lines of,
"Please don't say I have autism – that would mean it is separate from me
and sounds like a disease. Autism is not a disease, it is my identity
and I am proud of it."

I believe what the advocates are trying to communicate to us is that,
by using their identity first, the importance of diversity is
highlighted and the shame of the medical diagnostic stigma is lifted.
I'll go with what Lydia Brown has said because, well, she says it so
much better than I can:

"When we say 'person with autism,' we say that it is unfortunate and
an accident that a person is Autistic. We affirm that the person has
value and worth, and that autism is entirely separate from what gives
him or her value and worth. In fact, we are saying that autism is
detrimental to value and worth as a person, which is why we separate the
condition with the word “with” or “has.” Ultimately, what we are saying
when we say “person with autism” is that the person would be better off
if not Autistic, and that it would have been better if he or she had
been born typical." (http://autisticadvocacy.org/home/about-asan/identity-first-language/).

I just find this argument so powerful. She is saying that by
separating 'autism' from the person using 'with' or 'has', we are
valuing the person separate from the condition. I believe Lydia would
agree with you Lorraine, that we have to look at the whole person with
all their attributes. These attributes are highlighted more proudly when
we acknowledge the autism as an integral part of who they are. I believe
this also highlights their diversity- they are autistic and awesome
because of all the unique attributes that come with it. Not to say they
don't have their challenges, because they most certainly do! When we use
their identity first, we are valuing the person's right to overcome
challenges proudly, as an autistic person.

This is such an interesting standpoint and I am glad to get the
chance to hash it out with other CYC practitioners!

Nancy…

Hi Nancy,

I'm excited that you've raised a great question in regards to
neurodiversity!

I believe if we are truly working from a supportive, neurodiversity
based philosophy, then we recognize that the individual is the expert of
their own identity. I think what we've learned from neurodiversity, is
that many autism self-advocates prefer 'autistic' or 'autistic
individuals' because they believe it helps define them as a culture of
people. It is very similar within the disability community as a whole
and I believe this is a shift towards reversing the long-term systemic
affects of Ableism.

Some of the ways neurodiversity language has been explained to me is
how most people wouldn't say 'person with Catholicism' or a 'person with
Canadianism', you would say a 'Catholic person' or a 'Canadian person'.
These are the ways that autistic self-advocates also want to be
recognized. Like any group, race, religion or culture of people, I think
their opinion based off of their lived-experience is the most valuable
when it comes to the language we all use.

As you describe, it is about reducing the shame/stigma attached with
'autism' or 'disability' while validating and valuing the unique
struggles and strengths of this population!

Thank you for
sharing this post Nancy.

Best,

Yvonne Bristow...

Hi Yvonne,

Your excitement for neurodiversity inspires me as the topic makes it
way into the knowledge base of CYC. Let's definitively keep the
conversation going! I hope others get as excited as we do. Recognizing
young people are 'experts in their own identity' is a brilliant way to
put it.

Thank you for your reply Yvonne!

Nancy...

The reason I would disagree is that Catholicism is a choice, and a
practice, not a personal attribute. My concern is to avoid the
unfortunate practice that we have engaged in for a long time in our
field. “There’s the kid with A.D.H.D.”. The label thus becomes the kids
primary identity, although kids with A.D.H.D. have many other
attributes, many of them very positive. Or, “that kid’s angry”. Oh? Only
angry? Kids who feel angry are not just “angry kids” but kids with many
other qualities, not all of them negative. Thus “Autistic individual”
makes autism the kids primary identity. I can’t walk without a walker
but I wouldn’t want the first sentence of an introduction to be “Meet
Lorraine, she can’t walk without a walker”. While that’s true, it’s not
my only truth, and hopefully not my primary personal identification.
Good to discuss, however.

Lorraine...

I currently work within an intermediate Autism Program(TDSB) and to
be honest the majority of the communication within the CYC profession
utilizes terms that don't reflect who the individuals are; rather they
are known based on their working diagnosis. It challenges me as a CYC
(candidate) to read students files that have statements that generally
reflect a negative trait of the student "He is very aggressive," or,
"Autism is low/High on the spectrum. In a profession in which we care
for individuals in a variety of capacities one can identify quickly this
style of professionalism/or lack thereof impacts students. To broaden
this topic slightly in order to reflect on students of colour and
Aboriginal students, when they are not respected by professionals
utilizing a "person first" dialogue/communication this impacts how
others see them. We must translate the negative terms and labels and
advocate for individuals we work with. For example if a student comes to
school wearing baggy pants and a baseball hat I would not write that the
student appears rude/disrespectful of authority, or shows conduct
disorder etc. Where I am going with this is that our judgement of what
we know/what we see should never impact a student in a negative manner.
We must translate the negative labels into positive descriptions.
Documentation on children/youth, working diagnoses, or current
strengths, or areas of need must be written with a supportive
perspective. Finally as CYC practitioners we must ask ourselves when we
don't use person first dialogue/written communication are we indeed
continuing to serve our own purpose.

Keisha...

This has been a very interesting thread to read and I thank you all
for your fantastic input. I personally will continue to use the person
first approach as many have stated that first and foremost we are all
people. The reason being is that I would not introduce anyone as "this
is my catholic friend”, or “my gay client” or “my autistic friend” so
and so, it is not for me to introduce anyone as anything but my friend
or client. I’m all for people introducing themselves however they want!

Emily...

Thank you for joining in everyone!

Yes, it is important we get rid of the stigma of labels, especially
in practice! For this reason, in most cases, we use their names – not
the labels they have been diagnosed with.

What the autism community is trying to say is, yes, autism is not
their choice like Catholicism. They were born with it. That is exactly
why they want to 'out' this label rather than hide it. They want us to
know that all their wonderful personal attributes are because of their
autism, not despite of it. It is their primary identity.

They want us to know it is not a doom or gloom life sentence that
needs to be cured – like cancer for example. Autism is a life-long
condition, with both positive and challenging characteristics that the
individual must live with their entire life. They feel that making
autism the second thing you know about the person actually reinforces
the shame and stigma, not the other way around. By outing the label of
autism as nothing to be ashamed of, I believe we take away the stigma
and open opportunity for positive re-framing of negative attitudes.

I think what is most important here is to listen to the individuals
and their families, have the conversation, and find out exactly what it
is that they want. The autism community is clearly telling us that they
prefer identity-first language. They are proud of their autism, as it is
who they are. As my colleague Yvonne Bristow likes to say, autism is
more like a fingerprint than a cold.

However, this attitude is not shared by all young people and families
so it is very important to have this conversation with them to find out
what they prefer. It is our responsibility to listen and respect the
choice of young people, even if it challenges our assumptions and
professional biases.

They are important reads for anyone working with this population.
Thank you all for the conversation!

Nancy…

Hi all,

This has been a really great conversation!

I’d hope then when using any type of language, we always inquire with
the individual before we make assumptions on their identity. Many people
do like to be referred to in person first language, but I think we also
need to be mindful in understanding that many autistic people (and
autism self-advocates) find expressions like “person with autism” or “a
person who has autism” offensive. There are also those in the autism
community who do prefer “person with autism”, so let’s make sure we are
listening and respecting their individual preferences. As a young person
I was working with yesterday put it, “autistic people are skilled, have
unique interests, and have a lot to offer society”. He identifies as
autistic and I completely support him and how he chooses to identify.

Keisha, I have completely removed high/low function from my
terminology from my vocabulary since diving into neurodiversity
research. I personally believe that this isn’t how we should describe
people in any environment. You hit the nail on the head when you
describe how terminology can be negative and so often inaccurate in
describing the person. We are all complex and diverse individuals and
should never be defined by one component of our diagnosis, culture,
gender, religion or identity. I think we have a long way to go when it
comes to Ableism, but demonstrating consistent and genuine respect
towards these individuals and their wishes is a great place to start.

Yvonne...

I have been impressed with the thoughtfulness as well. I want to
clarify that I don’t think we should “avoid” descriptive adjectives when
talking about people, because being catholic, or gay, or autistic, may
be an important part of who they are. We just want to make sure that a
single characteristic is not presented as the primary or only
description of who they are.

Lorraine...

A very great conversation indeed,

I am glad I brought it up. You all make very good points and Lorraine
is absolutely right: looking at only one personal characteristic is so
very limiting and can be stigmatizing. Keisha and Emily, you articulate
very well the values of CYC practice and the purposeful use of
person-first language to reduce stigma, this is so important! Like many
of you have agreed, it is important to let the person tell us how they
would like to be referred to.

Thank you for listening to my side (and the autism advocates' side)
of the story. Yvonne, thank you for helping to articulate it! Removing
'high' and 'low' functioning from our language is essential. It is not
any easy task and I still struggle with this. I am getting better at it,
though. I was sent this Youtube video yesterday that explains the
spectrum like a circle- from the point of view of a young person
diagnosed on the autism spectrum. Such a great little comic – check it
out...

This is an interesting discussion, and one that is currently being
hashed out in many different contexts all over the world.

Yvonne, your comments remind me of a situation I experienced a couple
months back. Until then I had advocated strongly for use of people first
language in all discussions. On this particular occasion, I explained
the argument for people first language to my transgender friend as
thoroughly and convincingly as I knew how. They listened very patiently
and attentively, then put a hand on my shoulder and said, "Seth, you
don't get to decide for me."

I realized that, as is often the case, the solution is not as
clear-cut as we would like it to be.

I've enjoyed reading everyone's thoughtful comments.

Seth Osborn...

Seth,

I love your story and how patiently your friend waited
to hear you out. Brilliant! Great example, thank you for sharing!

Nancy

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